harsh reality

I probably could have added some other words to describe these, such as crazy. It is not politically correct to use that word, but when someone has any of these ailments it is how they feel. Sometimes their loved one’s feel the same having to deal with them during any of these. While they are all different ailments, they all have something in common. The person who has any of these becomes disoriented. When true reality and what is happening in the mind cross paths it leaves mixed up reality. With each of these there are similar symptoms.

I know more than I care to admit about all of the above. I did not look up the definition for each, as from what I have seen they are similar. Below are some of the symptoms of what I have witnessed of each lumped together:

Generalized or complete confusion. Not knowing what is happening, if it is real or in the mind, they may realize it or they may not know it is happening. They may forget who a person they have known most of their life is. They may think the person they have known most of their life is someone else. This could be someone they love or someone they do not like. If reading or watching TV, what they have read or seen may mix with the real world and they think that what they have read or seen is in their world. They may hallucinate. They may get angry, wanting to fight. They may get scared, afraid of everything, even themselves. They may not know who they are. They may not know where they are, what day or year it is. They may not know anything. Sometimes they revert back to childhood ways, which they usually do not realize. They may say things that they normally would not. Some of the things they say may be racial, sexual or somehow inappropriate. For the caregiver this symptom is extremely frustrating, because when you try to tell someone who does not know them, they will think the person always acts like that and you are just saying something to not anger or insult them.

To someone who is suffering from any of the disease’s I mentioned above and is aware they are having these symptoms, it must be scary. To not know what is real or what is in the mind. Sometimes when the person comes out of an episode, they are left with the feeling that whatever they thought while having the episode is still present or took place in some way. They must fear whether they can tell the difference between what is real and what they perceived or have felt is real. Most will act like everything is normal when they come out of an episode for fear of judgement, people questioning their sanity or even themselves questioning their sanity. Many people who suffer from these illnesses will come out of an episode and remember every detail, no matter how small. While their mind tells them it was not real, another part of the mind thinks it is because of the detail. It becomes a battle for the person to know what is real and what is not. Even then, some will think that whatever happened in their episode really did happen, that it was not a hallucination or dream but will keep it to themselves.

For those who suffer from any of the above and are not aware ever, it must still be scary. People they knew or trusted, they no longer know, yet alone trust. Everyone becomes a stranger. Reality is something so far removed they do not know what it is. They too try to act normal, as though they are aware. They may think they are living in the past and everyone and thing they see is somehow connected to that past or that everything/everyone has no connection. This is especially true, from my experience with Alzheimer’s. My grandmother on my father’s side had it. I would go to visit her once a week, she always told me it was nice for a stranger to come visit her. She always wanted to go home, even though she was in her home. The home she wanted was the home in her memories, no longer there. She seemed completely unaware that she had any mental type problem, she too tried to hide how she felt as though that would make everything okay. In the end she had to go to a skilled nursing facility that handled Alzheimer’s. She ultimately died from a stroke, but she was given very good care up until the end.

My grandfather on my mother’s side had dementia, though everyone said he was senile. He came to live with us after my grandmother died, before he had become swallowed by dementia. With dementia came many of the symptoms listed above. Because I was younger and had not seen anyone with these symptoms, it could be at times embarrassing when he was around my friends. They did not understand either, but always showed concern and were kind to him. He did not want to go to a nursing home. My mother would call an ambulance every few days as he thought he was dying and wanted to get to the hospital. Finally the hospital told my mother she had to put him in a nursing home as every time my grandfather had her call EMS someone else might be in critical condition and they needed to take care of those in need, not those who wanted to be at the hospital. It was arranged that the next time she called for an ambulance they would take him to the nursing home and tell him it was a hospital and he would stay. At first he was very happy there, but when he found out it was a nursing home, he refused to get out of bed and died not long after. My mother felt guilty until the day she died that she had put her father in a nursing home. But she had no choice. It is hard to tell someone who has a loved one that suffers from any of the ailments above that end up having to put their loved one into a skilled nursing facility or nursing home, that it is for the best. For my grandfather, it was. It may not be for everyone who suffers from these illnesses, but for some it is the only choice.

My father had cancer that was not curable. He was given 2 to 3 months to live after it was diagnosed. My mother brought in hospice about a week before he died, while caring for him herself most of the time. He died 2 months after the diagnosis. My siblings do not like that hospice was brought in. They feel guilt. As for my mother, she would develop dementia nine years later. She too would say inappropriate things, things she would never say if she were in her right mind. She would have been embarrassed if she had realized the things she said. It was hard. She had other health issues. My siblings wanted to bring her home from the nursing home that she was in after a fall. While on my last visit, I must have sounded cruel when I told them the rest of her life would be going from nursing home to the hospital and back. That they knew very little about health issues and they could not give her the care she needed. The words would come back to haunt me, as last February I realized that my husband’s life would be going from home to hospital until he died. The one common thread we all have is, we wanted to take care of our loved ones alone, at home.

My husband suffered from all of the symptom I listed at times. While he had a touch of this when he first became ill, the antibiotics he was given helped take the symptoms away in a day or two. When it first started for real, he was at a skilled nursing facility for rehabilitation after surgery for a 2 or 3 week stay. The nurses all said he had “institutional delirium” or the medication was causing his delirium. I did not think either were his problem. I did think that both made the problem worse. I called one of his specialists and they saw him the next day. They too knew something else was wrong. It was discovered he had an overactive thyroid that was causing the delirium. But there were other tests done. A CT scan, PET scan, MRI, EEG and a few more. Each of these showed signs of early onset dementia and early onset Alzheimer’s. The teams of doctors did not think those were his problems luckily. After the overactive thyroid was handled and he came home, he was normal, he was on prednisone. When his thyroid went back to normal, the prednisone was tapered. That is when the encephalopathy and delirium truly took hold. I could not leave him alone. There were times he tried to escape, thinking he was not in his home. He was truly experiencing everything I listed above and more. There were many trips to the ER. In the ER some doctors did not know him and quickly diagnosed dementia and Alzheimer’s. Luckily his regular doctors did not. Though it was not his normal doctors that realized what helped these episodes. After one of his many visits to the ER I realized that each time we arrived they gave him one shot of a type of prednisone and he became normal. After one hospitalization he was sent home on a higher dose of prednisone meant to taper off. When I began the taper he became confused again. I gave him the higher dose the next day and he was back to normal. So I called the doctor. He was sent to a neurologist who ran over 1,000 tests. This neurologist was not going to just give up and give an easy (wrong) diagnosis, thankfully. He promised me he would never give up and would find out what was causing these problems. My husband had a post traumatic stress autoimmune disease from his illness. His body no longer knew what was healthy and what was not. Luckily it was controlled with prednisone, but prednisone is not meant to be taken at large doses for a long time. There are other medications and they found one that worked after a few tries, though the prednisone was not tapered. Even though the medication worked, it did not all the time. The neurologist explained, in illness or during stress he would have episodes. My husband remembered most if not all of his episodes, when I would bring it up, he always told me he wanted to tell me when he was better everything he had felt and thought were real, that it was beyond comprehension. I never got to hear what he wanted to tell me, but I have a feeling I know most of it. My husband died before the prednisone taper could begin. He also had become very ill. He was back in the hospital when the doctor told me he needed to go to a Hospice Home. While my husband agreed and knew he was going, it was still hard. I was the one who always cared for him and I knew he would have preferred to be home. I must say that hospice gave him much better care than I ever could. Yet there still is that nagging feeling for not bringing him home, for letting him go to the Hospice Home. I slept there in a couch that turned into a bed or the recliner beside his bed for most of the 7 nights he was there. I knew he was dying, but he had beat death so many times in the past few years. The hope was in me he would beat death once again. It was not until I returned home after his funeral that I felt a twinge of guilt for not bringing him home. But the reality and rational part of my brain knows he had the best care he could have. Not having to care for him gave time for moments that I will remember for life. His days were still mostly confused, but he had moments of clarity in between, those are the ones that bring a smile to my face. Though I do not feel guilt, I still have sad feelings my husband ended up at Hospice. One other thing I still feel, the need to fight for him. I spent so much time fighting for him when he could not, it is a feeling that does not go away. It makes me feel useless, even though I know it not to be true. I used all my energy to learn how to fight for him, while forgetting how to care for myself. Now, I must learn to care for myself again. I was always independent, now I must find that part of me again and put it to use rebuilding my life. I do not like to tell my husband’s life story, I think it was his to tell. He did not care, he thought telling others might help. So I have not broken any confidence he put in me.

One of the hardest parts in dealing with a loved one who has any of these symptoms is, as their advocate you are making decisions on your own. You cannot ask them what they want. You cannot commiserate in bad times or rejoice in happiness together. You are alone. Even if you have family to help, you are still alone. You want to have the ability to snap your fingers and have things go back to normal. In my case, my husband was able to become normal but still had episodes. Even in his normal periods, he was not quite himself. I think some of that was fear or what he would say or do. I wonder when the person afflicted with one of these illnesses looks in the mirror do they see reality or do they see an alternate reality? Or maybe something else, maybe nothing. I would like to say I found a way to handle this, to some degree I did. But since I am being honest, it was much harder than I could ever explain. One thing I did know to do was to find something in the room, whether it be a sign, clock or just the wall color and have my husband look at it over and over, then tell me where he was. This helped when on rare occasions I came home and he would call not knowing where he was. Sometimes this happened at home. It seemed effective. That I was able to care for him during these periods surprised even the doctors and nurses. I wish I could give advice on how to handle someone with one of these ailments, but we all deal with things differently. I am just trying to shed light on what the caregiver may feel.

This too was started earlier to be finished sooner than now. I wanted to give some specifics of what both the caregiver and loved one might go through with these symptoms and ailments. That prednisone worked for my husband does not mean it would work for someone else. What I am trying to convey is not to give up. To continue to fight if you think the diagnosis is wrong. It may be correct, but all other illnesses should be ruled out first. Do everything you can to learn of the illness to help. Make sure to take care of yourself. Forgive yourself for what you cannot do. If you come to the point where your loved one needs skilled nursing or hospice, you should not feel bad. My only reason for this blog is if I can help one person to have it a little easier and get the correct diagnosis, it is worth reliving some painful moments.

When I was a young teen I looked older. I had no problem acting older and everyone around assuming I was older, wiser. As time went on my looks and age started to catch up and I appeared the age I was. As time went a little further I began to look younger than my age. I am not one to focus only on my appearance. I would rather people see me for who I am, not what I look like or what age I look. Many would be surprised to see I am nothing like what I look like on the inside. On the outside is a very composed woman, on the inside is one struggling to regain her life.

My husband was one year older than I am. When I first met him he looked older than I was, it must have been in the stage where I looked my age or younger. As time went on, we both aged. He probably aged more than I did in his appearance. Yet, if asked if he felt old he would have answered no. He never felt old until he became sick, even then he said he felt so much younger than his age or how he appeared. I, on the other hand if asked would tell you I feel much older than I look. I would have told anyone that if asked when I was just a teenager. I have always felt old.

During my husband’s illness I think we both aged. He aged a lot more than I did as he was the one that was so sick. I aged from the stress of worrying about him and the work put into keeping him well. At some point it seems we both aged a lot in looks. I would guess this is a natural occurrence that anyone dealing with illness or being ill takes. Illness is a harsh reality. One that brings everything into a clearer focus, a focus we might not want. Yet the alternative is not preferable. So we take our aging with a grain of salt.

My husband had many doctors. As time went by, more illnesses would affect him requiring new doctors in different specialties. Some illnesses were side effects from the medications he needed to stay alive, some were just unrelated or were just progression of the illness affecting other parts of his body. After one such new illness we went to a new doctor. The nurse checked us in (I will probably use the word us, as he never went in to see the doctor alone). When she was done with his info, she mentioned it was nice that I brought my father to his appointments. I told her I was his wife. She had a very odd look on her face and quickly replied “you must be much younger”. I did not bother to correct her as it would only bring more attention to what I not only felt was uncomfortable, but I did not want my husband to be upset by it. He on the other hand told her with a big smile “I got a real looker when I married her”. He did not see that she had been pointing out our looks and ages, rather his impression was she just thought I was pretty.

I am not going to say it was unprofessional of the nurse to have said what she did. I think people are too sensitive when others speak their mind. We need more people who speak their mind, not just tell us what we want to hear. Not be cruel, but be honest. The nurse was just saying what reflections of us looked like to her, she meant no harm. Had I been the one she thought looked older, I would have felt the same way, I would not have been upset. The nurse was not trying to be cruel or offensive. If that were the case, then I would have spoken up and she would have listened. It must be hard for nurses as well as doctors to meet and get to know new patients and their significant others, caretakers.

Another new illness sprung its ugly head almost a year later. This meant a new specialist. Once again after the nurse had checked us in she made a comment. This comment was different. She thought it was nice my husbands granddaughter was taking care of him. Granddaughter? I know he had aged, I know I had aged, but had he aged that much in one year I wondered. I mentioned to the nurse I was his wife and she apologized profusely saying she did not mean to offend my husband. I told her it was okay. By this time my husband had started to pay attention to anything but the fact that he was in the doctor’s office for another illness. He was busy trying to make sure what he said came out correctly, he wanted to be able to joke with the nurses or doctors to make them feel more comfortable and yes, to make himself more comfortable with all that was happening as well. He never heard the granddaughter remark.

He did on occasion catch glimpses of himself with all the mirrors and reflective surfaces in the universities clinics, which are located and attached to the hospital. Sometimes he would ask me if he looked as bad as the reflection. This was a hard one for me, as when I looked at him, I did not see a sick man or an old man, I saw the man I loved. But if he asked then I would have to look at his appearance. I did not want to lie. So I would tell him how we all reflect badly in the surfaces there. He was satisfied with that answer. There were other times he saw things and was more specific with his questions. An example would be, if he looked as skinny as the reflection, with this I would answer he had lost weight but the reflections were still distorted. It was hard to catch a glimpse of myself. It must have been extremely hard on him to see himself in the reflections.

I wonder how many people go into the hospital for long stays with serious, life threatening illnesses come out looking no different then when they first were admitted. I know from my experience, there were some in rooms near my husbands whose loved ones started to age while they were there. All the ill near my husband’s room did not have such long stays in the hospital as my husband did, yet their weariness was evident in their appearance. I never mentioned it to any, they were going through enough worry. I am sure many felt like I did, no longer caring what we looked like, just wanting our loved ones to recover and come home with us.
Now that my husband has died, I wonder if my appearance looks as if I have aged more. I wonder if my face has got the look of someone who is so tired and worn out that even the thought of doing anything makes me feel worn out. I wonder if the blank stare I feel I have all the time appears to others. There are also times I wonder if I look the same as before. For some reason, looking the same is not a comforting thought. It should be, but it is not. If I look the same, I feel as though all that we went through together left no mark on me. As though it never happened. As if my husband was just a passing thought not an every day, important and essential part of my life. For now I will not know what I look like. My husband was my most truthful mirror. He is not here to tell me. As for the mirror, I am not ready to look into one quite yet.